Monthly Archives: January 2017

The most commonly prescribed fluoroquinolones are Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin, and Floxin/ofloxacin. Almost every “floxie” that has been poisoned by fluoroquinolones in the last 15 years has taken Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin, or Floxin/ofloxacin. However, there are many other quinolones and fluoroquinolones that have been developed. Here is a list:

Delafloxacin (Baxdela) – Delafloxacin/Baxdela is being developed by Melinta Therapeutics, and is currently undergoing Phase III trials. It is supposed to be more effective at treating MRSA and other bacterial infections that are currently resistant to other fluoroquinolones. Melinta says that delafloxacin/Baxdela has a “favorable safety profile,” but, frankly, I don’t believe them. Bayer says that Cipro has an excellent safety profile, but thousands of people have been injured, disabled, and killed by it. Delafloxacin/Baxdela will be effective against gram-positive, gram-negative, atypical and anaerobic bacteria–meaning that it will be a broad-spectrum antibiotic that will kill all microorganisms in its path. I understand that MRSA is a serious, and potentially deadly infection, and that it may be appropriate to use an extra-powerful fluoroquinolone in cases of life-or-death. However, as an extra-strong fluoroquinolone, with an increased scope of bacteria that it kills, it will be a dangerous, and deadly for some, drug. I hope that delafloxacin/Baxdela will be reserved for treating life-threatening MRSA infections, and that it will not be prescribed for treatment of simpler or less dangerous infections.

JNJ-2Q – JNJ-2Q is being developed by Furiex Pharmaceuticals, who have licensed JNJ-Q2 from Janssen Pharmaceuticals, a unit of Johnson & Johnson. Like delafloxacin/Baxdela, JNJ-2Q is being developed for the treatment of MRSA, and it is also a particularly strong and potent fluoroquinolone. Again, I hope that it is only used for deadly MRSA infections.

Nemonoxacin (Taigexyn) – Nemonoxacin/Taigexyn, developed by TaiGen Biotechnology Company, is currently undergoing phase III trials in the U.S. However, it has already reached the market in Taiwan, Russia, Commonwealth Independent States, Turkey, mainland China, and Latin America. It is also more effective against MRSA than the fluoroquinolones that are currently on the market, and it is more potent than ciprofloxacin, levofloxacin, and moxifloxacin. Not-so-fun-fact – Nemonoxacin has been fast-tracked for approval by the FDA.

Zabofloxacin – Zabofloxacin was discovered by Dong Wha Pharmaceuticals and licensed to Pacific Beach BioSciences for development. It is currently undergoing clinical trials. “The spectrum of activity of zabofloxacin includes bacterial strains that are responsible for most community-acquired respiratory infections. Phase III clinical studies are currently ongoing at Dong-Wha for the treatment of patients with acute bacterial exacerbation of chronic obstructive pulmonary disease.” (source)

Be aware that these new fluoroquinolones are in the pipeline. Know their names so that you can avoid them.

I’m not sure how anyone else’s medical record works, but when I asked my doctor to put that I am allergic to fluoroquinolones on my medical record, her computer system wouldn’t allow her to do so. Instead, I had to list all of the fluoroquinolones that I wanted to avoid individually. I suggest that you tell your doctors not only that you can’t have fluoroquinolones, but that you can’t have Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin, and Floxin/ofloxacin specifically. And, when they reach the market, I suggest that you add Baxdela/delafloxacin, JNN-2Q, Taigexyn/nemonoxacin, and zabofloxacin to your list of drugs that you cannot tolerate.

I find the dissonance between the people who review drug safety, and the people that approve new drugs, both of whom are within the FDA, to be a bit mind-boggling. How could the Antimicrobial Drugs Advisory Committee decide that the current warnings on fluoroquinolones are inadequate and that they shouldn’t be prescribed for sinus infections, colitis or UTIs, or chronic bronchitis because they are too dangerous, while another part of the FDA fast-tracks the approval of Taigexyn/nemonoxacin, an even more powerful fluoroquinolone antibiotic? Do they not speak to each other? I can’t fathom that there is not at least some overlap between the Antimicrobial Drugs Advisory Committee and the people who approve new antimicrobial drugs. Are there people at the FDA who are screaming about these new fluoroquinolones that are about to enter the market, and noting that they are horribly unsafe? Or, did the Antimicrobial Drugs Advisory Committee just update the warning labels on existing fluoroquinolones to shut up patient advocates (you and me)? Is there massive cognitive dissonance at the FDA? Because it certainly appears that there is. The people at the FDA, and the Antimicrobial Drugs Advisory Committee specifically, pretend to acknowledge the dangers of fluoroquinolones, and pretend to do something about those dangers, while still thinking that it’s appropriate to approve new, stronger fluoroquinolones for public use. It’s mind-boggling.

I hope that the new fluoroquinolones that are coming to market are only used to treat life-threatening MRSA infections, but I have no faith that that will be the case. These new fluoroquinolones will be marketed as being bigger/better/faster/more powerful than safer alternatives, doctors will prescribe them, and patients will suffer because of them. Hopefully I’m being too pessimistic, and some prudence will be shown in the prescribing of these dangerous drugs–I doubt that though.

Just be aware of the dangers of fluoroquinolones–both old and new, and protect yourself and your loved ones. Share information about the dangers of fluoroquinolones with your friends and family, and let them know that fluoroquinolones should never be used unless there are no viable alternatives, and the infection is life-threatening. These new fluoroquinolones are more powerful, and more dangerous, than the fluoroquinolones that are currently on the market, and the ones that are on the market are pretty horrible. They should all be avoided like the plague.

You can download all episodes of The Floxie Hope Podcast through any podcatcher app that connects to iTunes.

In this episode of The Floxie Hope Podcast Clara goes over her fluoroquinolone toxicity symptoms, as well as some things that have helped her. She gives wonderful insight and advice!

After taking Cipro, Clara’s toxicity symptoms included:

Nausea

Loss of appetite

Insomnia

Loose teeth

Bleeding gums

Getting sick easily / suppressed immune system

Anxiety

Depression

Fatigue

Brain fog

And more

Clara has improved greatly with the assistance of a naturopathic doctor who focuses on balancing her hormones. She has also benefitted from an anti-candida diet, and several supplements. Please listen to the podcast for more information about her journey.

Thank you so much for being on the podcast, Clara! Your journey is inspirational and valuable!

The entire post is enlightening and informative, and I encourage you to read the whole thing. Here are some excerpts that are particularly enlightening and useful for “floxies.”

“A particularly interesting, and in my opinion, potentially significant “Lead Re-exposure” incident may have occurred when I took a fluoroquinolone antibiotic over six years ago. I experienced a severe, acute, and ultimately permanent adverse reaction to just a few pills, described in articles I previously wrote for this website, here and here. Symptoms of “Fluoroquinolone Toxicity” appear to mimic many other conditions, and lead toxicity is one of them. I describe how these FQ antibiotics may have contributed to yet another bout of “Acute Lead Toxicity” within myself after taking these antibiotics here (Scroll down about 60% of the page to “V-ATPase: Target for Osteoporosis /Adverse Effects”). How do I know if that did or did not happen to me? I don’t – because I didn’t know to test blood lead levels during the acute stage (first 6 months) of my reaction or beyond. But now that I do, I would recommend all severely affected fluoroquinolone victims monitor blood lead levels over time during the course of their reaction, especially during the acute phase and relapses, to see if this might be something occurring in this population. A nice summary in table form shows the biological fate of Lead and its clinical significance here.”

And:

“After that, it’s well accepted that overall mineral status is a factor. Lead competes with essential minerals such as calcium, iron, phosphorus, and zinc for the same receptors in enzymes, transporters, and in cell signaling processes. Adequate concentrations of minerals can offset the small concentrations of lead found in background levels of foods and soils, and can only help if Lead exposure increases. Keeping a healthy balanced mineral status is probably one of the best defenses against lead toxicity, forcing lead excretion rather than binding to enzymes or storing in bone. High concentrations of healthy essential minerals combined with low concentrations of lead levels is the best scenario, as essential minerals we need to function would be able to out-compete lead for enzymes, receptors, and transporters. On the other hand, low concentrations of healthy essential minerals combined with high lead levels would be a worst case scenario for potential toxicity. Children and adults eating healthy diets with adequate minerals will probably experience less toxicity to the same exposures of lead than someone who is deficient in calcium, iron, phosphorus, zinc or other minerals. Unlike when I was a young child, there is so much more knowledge and awareness about minerals and their importance today, and the internet makes this type of information easily accessible. A vast array of mineral supplements are available as well, making this an easy approach to help with prevention. A nice lead-related summary of nutrients can be found here: Fact Sheet: Nutrients That Reduce Lead Poisoning.”

The whole post is filled with great information, and I encourage each of you to read it. It also contains a list of links and resources that is immensely valuable to anyone interested in learning more about lead as it relates to illness.

Thank you for checking it out, and a huge THANK YOU to JMR for the post!

My Healing Journey

Acupuncture helped me immensely in my journey through fluoroquinolone toxicity, and I even credit my acupuncturist with saving my life when I felt like a bomb was going off in my body. Several people have asked me what my acupuncturist did that helped me through fluoroquinolone toxicity. The honest answer is—I’m not sure. I don’t know enough about acupuncture or to tell anyone else how they might be able to replicate his methods or my healing. I do know, however, that I was spiraling when I first saw him. I was anxious, scared, and on the verge of panic because something was wrong with my body, and I had no idea what was going on or how to fix it. My acupuncturist was able to stop my cycle of anxiety, fear, and panic. He was able to calm me down. It helped—immensely—and it saved me from getting worse physically and psychologically.

A lot of the things that helped me to heal from my adverse-reaction to Cipro/ciprofloxacin were things that diminished my anxiety, quelled my fears, and calmed me down. I took a Mindfulness Based Stress Reduction class (through my health insurer—Kaiser Permanente) within weeks of getting floxed, and it helped a lot (I always felt better the day after the classes). I learned to meditate and I started some spiritual practices, and those were helpful as well. I removed stress and fear inducing things from my life (mainly, I got off the internet), and I found that I felt better when I removed those influences from my life.

I’m not saying that fluoroquinolone toxicity reactions are because of stress or anxiety, or that they’re “all in your head.” I am, however, saying that reducing stress helped me to recover, and that things that increased my stress levels made me feel worse. I also think that we shouldn’t have knee-jerk reactions against hypotheses about fluoroquinolone toxicity that look at how we react to stress—after all, stress affects everything (hormones, mental function, cardiovascular system, digestion, etc.). Additionally, there have recently been some interesting studies and hypotheses about how people respond to stress on a cellular metabolic level that are likely applicable to floxies.

Are Some People Genetically Predisposed Toward Shutting Down in Times of Stress?

On Dr. Sharon Meglathery’s web site, http://www.rccxandillness.com/, she hypothesizes that people who have a variety of multi-symptom, chronic illnesses (including ME/CFS, fibromyalgia, POTS, EDS, autoimmune diseases, psychiatric diseases, etc.) have a common set of gene mutations that make them unable to cope with stress on a cellular/chemical level. She notes that:

“Let me illustrate how a clinically “healthy” carrier for a non-functioning CYP21A2 mutation (or a person with 2 mutated copies of partially functioning genes) could possibly develop chronic illness: Cortisol is a hormone needed for a normal stress response. Cortisol is made from 17hydroxyprogesterone by the enzyme called 21hydroxylase. 21hydroxylase is coded for by the CYP21A2 gene in the RCCX module. If a carrier for a CYP21A2 mutation which makes no functioning 21hydroxylase or a homozygote for partially functioning 21hydroxylase has chronic stress and needs to make lots of cortisol all of the time, it is possible that there may not be enough 21hydroxylase available to make the amount of cortisol the body needs. In this case, cortisol levels would be abnormally low for the amount of stress, 17hydroxyprogesterone would be abnormally high causing symptoms and some of the 17hydroxyprogesterone would be used by an enzyme coded for by CYP17 to make an abnormally high amount of androgens (male sex hormones) also causing symptoms. As I will show later, the symptoms caused by these hormonal abnormalities are shockingly familiar to those with chronic illness. Further, high cortisol releasing hormone (CRH), released when cortisol is too low can turn on devastating inflammatory cascades, including mast cell activation. (High CRH has recently been found to be associated with FM).”

Could the people who get “floxed” have CYP21A2 mutations that make them unable to cope with stress on a cellular level? Might the multi-symptom, chronic illness and disability that many floxies suffer from start with improper cortisol synthesis? It certainly sounds like a reasonable hypothesis to me.

Of course, the hypothesis that Dr. Meglathery is putting forth needs to be studied in order to be verified, and then further studies would need to be done to see if people suffering from fluoroquinolone toxicity have these genetic mutations, in order to verify that hypothesis. We are in the very early stages of figuring out what is going on in the bodies of everyone suffering from multi-symptom, chronic, illnesses—especially those caused by pharmaceuticals.

The Stress and Chronic Illness Cycle

Dr. Meglathery also explains how chronic stress could lead to the following ailments in people who are genetically predisposed to being unable to produce sufficient levels of cortisol:

“At this point, if you are aware, you usually see some mild MCAS symptoms (allergy symptoms: hives, migraines, food intolerances, asthma, diarrhea, irritability, brain fog, increased distractibility and escalating sensory issues). CRH, the hormone released by the hypothalamus telling the body (via the pituitary) to make cortisol when cortisol is inappropriately low, is released in a pulsatile fashion. CRH is the most potent activator of mast cells in the body and found to be high in FM (Published by Dr. Theoharides, 1/16). It also decreases stomach acid, possibly contributing to dysbiosis and malabsorption; it stimulates the sympathetic nervous system causing the release of even more adrenaline and nor-adrenaline (norepinephrine) and it directly turns on the immune system. CRH release may be the master switch which propels a person with CYP21A2 mutations into irreversible chronic illness by effecting downstream changes which place an insurmountable and persistent stress load on the body. The demand for 21hydroxylase can now never be sated. I believe that people with CYP21A2 mutations who are exposed to Borrelia burgdorferi, the pathogen in Lyme Disease (which directly activates mast cells) and other strong infectious stressors, like EBV, jump straight to immune system activation, flipping the switch by bypassing CRH initially, but CRH rises later in response to the chronic stress of infection, locking them into chronic illness. Low blood volume/orthostatic challenges worsen (POTS), pain syndromes develop (via low cortisol, increased subluxations/injuries, inflammatory mediators affecting nerves, high 17hydroxyprogesterone), raised intracranial pressure/acquired chiari malformation can occur (via progesterone, low magnesium, brain inflammation from MCAS, etc.) and MCAS is present consistently.

With the immune system dysregulated, dysbiosis becomes fully established with gut inflammation and malabsorption. The body becomes colonized with new pathogens (through the porous gut and other pathways) and SIBO can occur. Pathogens already present start to cause problems (fungus-athlete’s foot, herpes virus-cold sores, low virulence bacteria and viruses like mycoplasma, etc), the ability to fight serious infection drops and in many, the ability to fight the viruses which cause colds increases. The body is now under tremendous physical stress and the person is under tremendous negative emotional stress, both of which increase the cortisol deficit and sustain the growing list of medical issues. If brain inflammation is part of the picture (likely as part of MCAS), we get psychosis and severe mood disorders plus or minus the physical issues. This is a downward spiral which few escape.”

As you can see from Dr. Meglathery’s connections above, stress, especially chronic stress, can start a cycle of chronic illness in those who are genetically predisposed, and the chronic illness cycle includes many of the symptoms of fluoroquinolone toxicity.

Cellular Stress and Chronic Illness

The tendency for chronic illness to be self-perpetuating on a cellular level is also demonstrated in Dr. Robert K. Naviaux’s acclaimed 2016 study, “Metabolic Features of Chronic Fatigue Syndrome,” which finds that, in ME/CFS patients, mitochondria respond to stressors by decreasing oxygen consumption and the transfer of cellular energy production—ATP—from inside the cell (where it belongs), to outside of cells (“Finding ATP outside a cell is a sign that something major has gone wrong.”). People with ME/CFS get “stuck” in a state of “hypometabolic response to environmental stress similar to dauer” – a cellular state that is similar to hibernation. This hypometabolic/dauer state is triggered by mitochondrial stressors (mitochondrial stressors can include emotional and psychological stress, as well as things like viruses, toxins—including many pharmaceuticals, malnutrition, etc.). It is noted in “The Core Problem in Chronic Fatigue Syndrome Identified? Naviaux’s Metabolomics Study Breaks Fresh Ground” that:

“Naviaux believes the mitochondria are able to sense every kind of danger – from pathogens to pH changes to toxic elements from pesticides, heavy metals, etc. to inflammation. They sense trouble in the form of an infection when they detect a drop in voltage caused by the diversion of electrons (NADH / NADPH) to make viral components or respond to a broad variety of toxins.

In the cell danger response (CDR) the mitochondria respond instantaneously to that loss by decreasing their oxygen consumption – thus thwarting pathogens from using the building blocks of the cell to replicate. Because the oxygen is no longer being used, it builds up in the cells causing a oxidatively charged environment which interrupts viral synthesis. The CDR also stiffens the membrane of the cell to stop pathogens from exiting it, warns other cells of the danger, and emits ATP in order to warn other cells to get their defenses up.”

Concluding Thoughts on Stress and Fluoroquinolone Toxicity

Again, I want to emphasize that these connections are hypotheses, not proven facts. However, as the fields of metabolomics and genetics progress, I suspect that we will find answers to fluoroquinolone toxicity, and all other multi-symptom, chronic illnesses.

You may be wondering, how does one get out of the stress/chronic illness cycle? As anyone who has researched or experienced a chronic illness knows, that question is much easier asked than answered. The fluoroquinolone toxicity recovery stories on this site give some valuable suggestions for those dealing with fluoroquinolone toxicity, as does the post “I’m Floxed, Now What?” Before getting too overwhelmed with advice though, a first-step in the right direction may be to reduce stress. We all have stress in our lives—but if there are things that you can do to avoid it (staying away from people and information that give you anxiety, and also avoiding mitochondrial toxins), or that help you to cope with it (meditation, mindfulness, etc.), those things may be helpful in starting your fluoroquinolone toxicity (or other chronic illness) recovery journey. It is difficult to reverse the cellular cycles of chronic illness, and reducing stress is not a quick-fix or easy answer, it is more like a starting point.

I know that it sounds simplistic and dismissive to tell you to “reduce stress,” but hopefully the information above demonstrates that stress is related to every bodily function, and it is intimately connected to chronic illness. Neither chronic illness nor stress, nor their connections, are trivial or to be dismissed in any way. If Dr. Meglathery is right, and there are some people who are genetically predisposed toward an inability to handle stress on a cellular level, avoiding stress (including toxins, viruses, etc.) may be key for avoiding chronic illness for those people. I suspect that everyone who is “floxed” falls into the category of “those people” who are more succeptible to harm from stressors than others. It isn’t easy to avoid stress (or stressors like toxins and viruses), but doing so may be necessary for your health, and it also may be a key to your healing. Most stress-reduction exercises and tools are inexpensive and easy to access, so they’re almost certainly worth a try.

You can also download the podcast onto your phone or other device through any podcatcher that connects to iTunes. Thanks for listening!

Please note that this podcast is over two hours long because of some technical difficulties on my (Lisa) part. We recorded the podcast twice, and both recordings are included. The first part of the podcast is actually the second interview. I included it first because the sound quality is better on it. The second half of the podcast is actually the first interview. If you can stand the horrible sound quality (SORRY!), feel free to listen to it first. It starts around the one hour seventeen minute mark. This cartoon reflects the tone of the first (second recorded) part of the podcasts:

The second part of the podcast (first recorded) goes over more of Scott’s journey. Here are some notes from his journey that are helpful. From Scott:

One thing I forgot to mention during BOTH podcasts (LOL!) is that when I was in a lot of pain, it turns out that daily meditation helped my mental agony over my situation. It didn’t necessarily make the pain go away (although a few times, it felt like the pain disappeared during the meditation), but it definitely helped me mentally & emotionally deal with my situation much better. I use an app called Headspace, which talks you through daily 10-minute meditations.

Myofascial Release was my first glimmer of hope that maybe I could beat this thing. My first myofascial release session with Jody Hendryx of Verde Valley Myofascial Release in Sedona, Arizona was the first time that my pain disappeared in my ankles. I tried about 15 different myofascial therapists before realizing that Jody was the most skilled one that I could find, so I would recommend to people that they shop around to different myofascial therapists if they’re not feeling results.

I definitely recommend acupuncture visits and chiropractor visits. For chiropractor visits, The Joint is a nationwide company that I’ve been using with great results.

Collagen seems to have helped with some of my snapping tendons, although I still have many tendons that are still snapping. This is the brand of collagen that I take, mixed in with whole-milk yogurt (never fat-free nor low-fat yogurt): Vital Proteins Collagen Peptides

I found The Flox Report PDF to be very helpful for me, with a bunch of great hidden tips. The Flox Report does make it clear that not everybody can heal themselves from fluoroquinolone toxicity, but there are charts & tables which help you figure out where you fall on the spectrum of toxicity.

A very high-fat diet positively impacted everything for me with my health. I felt dramatic health improvements after starting this way of eating. Specifically, my diet is “high fat, medium protein, low carb, no sugar”. Some excellent books on this topic: